Chris Brannigan is on a mission to help save his daughter’s life, and he’ll stop at nothing to make it happen.
When 9-year-old Hasti was born, she was underweight despite not being premature. Just a day after her birth, she had a seizure, and for the first year of her life, she wouldn’t eat willingly. These health problems would keep Hasti and her family in and out of hospitals and the ICU for years.
Finally, after seven long years, they got a diagnosis: Cornelia de Lange syndrome, a rare genetic condition caused by a mutation in a single gene. Some issues present with the disorder include reduced growth, premature aging, severe anxiety, speech and language difficulties, and more.
“Ultimately it means that Hasti will never be able to achieve an independent life and it comes with a whole list of medical complications, cardiac problems, cognitive disability, etc.,” Chris said.
As of now, there aren’t any treatments for this condition that affects one in every 30,000 live births, but there is hope. Research is being done and a gene therapy is being developed. Unfortunately, the timeline for safety testing and getting FDA approval is grim due to the cost.
Determined to change the life of his daughter and every other person with CdLS, Chris founded the charity Hope for Hasti three years ago. Since then, he’s worked tirelessly to raise money so The Jackson Laboratory, a biomedical research institution, can move forward sooner than later.
Last year, the British dad walked 700 miles in the U.K. while barefoot. Although he raised a whopping $1 million, their goal of $3.5 million is still far out of reach.
Researchers are hopeful, noting that the treatment they’re working on seems to be safe and potentially effective so far. Unfortunately, CdLS worsens with puberty, meaning Hasti and her family are working against time.
“When I look at Hasti I see this amazing little girl,” Chris said. “I sometimes don’t see her challenges but I know she will get worse from puberty.”
With $2.5 million left to raise, Chris decided to set out barefoot once again, only this time, he’s taking things up a notch. Rather than walk 700 miles, he embarked on a 1,200-mile journey from Bar Harbor, Maine, to Jacksonville, North Carolina, at the end of August.
“I’m doing the walk alone,” he explained. “I don’t have any support crew, there’s no one following me supporting me, and I’m doing it barefoot because as a rare disease family it’s often a very lonely experience.”
With the help of his two sons, Chris packed a 55-pound backpack full of everything he’ll need to camp on the side of the road as he goes. Hasti also chipped in, giving her dad one of her teddy bears to keep him company.
As a British Army major, Chris has endured a lot in life, but he’s never experienced anything quite like fighting for his daughter’s life.
“Despite having deployed on operations before, this certainly is the hardest battle of my life,” he said.
Thankfully, he isn’t alone. Despite going into the walk solo, when traveling 700 miles last year in the U.K., Chris said he received so much love and support. Strangers would take the time to walk with him, and he’s hoping for similar support in the U.S.
“It’d be great to have people come out and just walk a mile with me and keep me company,” Chris said. “Because it can be quite lonely.”
The long, treacherous journey won’t be easy, but the end goal is giving him all the strength he needs.
“I have made it my mission to change Hasti’s fate. We are creating a gene therapy for CdLS that will benefit those currently suffering with the disease and the children who will receive the diagnosis in the future,” Chris said. “Don’t let this disease rob anyone else of the life they deserve. Help me to fight this battle to change my little girl’s fate!”
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